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smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/17/2007 4:57 AM (GMT -7)   
Hi there. I'm just curious as to how many of us Lupies are dealing with other chronic conditions as well as Lupus? I was diagnosed with RSD (Reflex Sympathetic Dystrophy) in 2003 and then in 2006 I was dx with Lupus. I also suffer from Thyroid Disease. Am I in the norm here, do others suffer from more then one condition?
Just curious,
Connie :-)
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/17/2007 8:26 AM (GMT -7)   
Hi Connie . . . . YUP! You are the norm here. Most members have several conditions they are dealing with. I was dx'd with lupus by one doc and another said no, that it's UCTD but he treated it just like lupus . . . he said I still could have sjogrens or scleraderma, but he writes "inflammatory arthritis" on a lot of my paper work. I aslo have Hashimoto's Thyroiditis. If you look at people's signatures, you'll see how many different diseases some of the members are dealing with.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 10/18/2007 2:12 AM (GMT -7)   
Yes, I too have a bunch of other stuff going on. Check my signature line for info.
Also, I was diagnosed with RSD in 1999 after 2 years of unrelenting and worstening pain in my feet & legs that occurred after an injury. In 2000, I got to see an excellent doctor who specialized in Rehabilitation & Physical Medicine. He worked magic with me, got me off all the medications (that weren't really helping anyway), and got me into remission in 2001. The RSD stays in remission as long as I do some of the exercises he taught me to do.

Take care,
-Razzle
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, malabsorption/malnutrition, etc.
Meds:  Pulmicort, Claritin, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/18/2007 10:54 AM (GMT -7)   
Thanks Ladies. Is Stomach problems all part of Lupus as well? Does anyone have troubles with upset stomach and a stomach that just doesn't feel good at times for no reason?

Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/18/2007 5:32 PM (GMT -7)   
Connie . . .I have had every changing GI problems. Not constant, but frequently. I started with upper GI stuff and extreme GIRD with erosion. After getting thru that, I have had a really strong gut! Now my issues are with the lower bowel. The inflammation is extremely painful and doubles me over in agony when it hits. It lasts from a couple days to a couple weeks when it gets going and has preceded my most recent flares. Oddly, attacking it with round the clock anti-inflammatories has been the best course of action . . . which confirms to me that it is indeed inflammation. . . . other bowel issues would be irritated by that stuff.

I have seen many of the others here go into anything from reflux, to nausea, to diahrea and pain.

I do see that you are taking quite a med buffet . . . that would be suspect as well.

Make sure your doc knows about this too. Sending you a nice hot cup of tea!!

Blesssings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/19/2007 4:42 AM (GMT -7)   
Always Rosie, thanks for the tea, I am enjoying it right now as I type this reply back to you. :>)

I hate it when my stomach bothers me, nausea is almost the worst thing in the world to me and I hate hate hate it. My stomach also gets that painful stomach grabbing pain that doubles me over too and I didn't know what it was, other then I thought it had to be part of the disease. I take all of my pills with food, to try to fight at least that problem. I don't see my Rheumie until January. My Family Dr. is aware of my problems and put me on the pantoloc. It helps but just barely.
I have always wondered if there is a certain way I should be taking my pills. I just take them all at once with my breakfast. I should look into that. My bowel problem is constipation rather then diahrea and has been a big problem for me as well. It just all tires me out smetimes. Oh well, i know it could always be worse and I am thankful that it isn't.

Anyway thanks so much for the reply.
Wishing you a nice relaxing weekend
Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/19/2007 4:45 AM (GMT -7)   
Razzle that is wonderful news that you were able to get your RSD under control. May I ask what treatments led to that amazing event? Most days I don't know which bothers me more, the Lupus or the RSD, but one thing for sure I can certainly tell the pain apart.
I have went through 11 Lower Lumbar Nerve Blocks in 2005 to treat the RSD, it wasn't much help other then it gave me some more movement in my left leg, which is still bent at an akward angle.

I am glad to hear that your RSD is under control, good for you!!!!!!!!!!!

Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/19/2007 6:11 AM (GMT -7)   
Connie,

I use a really nifty medicine divider. There is one big tray that holds 7 individual columns of dividers. Each of the 7 snap out individually in case you need to take it with you that day. and each of the 7 has 4 little doors in it. I divide my meds into the 4 sections. I take first two sections with breakfast, one mid-day and one at bedtime. I divide my plaquenel into two doses just to protect my stomach. . . and the other meds are divided so I'm not taking so many pills and supplements all at the same time.

I have two sets of these pill dividers and I load enough pills for two weeks at a times. Its been working out the best of all systems I've tried. And I set today's pill holder in a spot in the kitchen where I bump into it several times thru the day.

It might help your tummy if you divided up your meds. But, it also sounds like you need to add more fiber and water to your diet. If you can't eat more high fiber foods, try the tablets or the stuff you stir into water . . . I bet that would take care of the constipation, which would also help your stomach feel better. I've written several posts on Kefir too . . . that really helps the gut issues.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/19/2007 6:49 AM (GMT -7)   
Thanks Rosie. I put my pills in a pill container on Sunday nights for every day of the week.The only ones I take at night are two of the stool softners and my pain pill.The rest I take in the morning. I should try splitting them up and see if that makes a difference. Thanks for the ideas.
I'll let you know if it helps.

Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/19/2007 9:31 PM (GMT -7)   
Hi Connie and Rosie--
I have been having gi problems for years and AI problems and I have irritable bowel syndrome and diverticulosis that is all through my colon (which is abnormal for my age) and I have had a cancerous polyp and now have some unexplained red patch on my small intestine that is causing me grief as well as a lack of pancreatic enzymes at times. My gi recommends that I take dicyclomine (Bentyl) which is an antispasmodic with a constipating effect for the IBS and constant diarrhea instead of immodium all the time. I guess it's not good for you to take it for months. My rheumie said that people with lupus often have problems with an insufficiency of pancreatic enzymes so your food does't get digested well and comes out about how it went in or your stools float (sorry to gross you out) so he recommended over the counter pancreatic enzyme supplements. I haven't gotten them yet. Probiotics like kefir and probiotic yogurts are also my standbys but don't help these other problems, but are essential after taking antibiotics, I think. Well, as you can see from my signature I have more ai problems too. I'm not normal (in many ways, LOL). I had AI disease and was misdiagnosed with hep c and put on interferon (an immune system booster) which threw me into horrible constant bleeding out and I nearly died and have some permanent damage from that as well. It was the worst thing they could have given me but they told me I would die if I didn't take it and I was young and a single mom. I'm older and wiser now.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/19/2007 10:49 PM (GMT -7)   
Connie, My stomach bothered me a great deal when I had my first big flare. Plaquenil bothered my tummy for a month or two when I began taking it but it doesn't bother me anymore. When I was on higher doses of prednisone, that was also real hard on my stomach and can cause ulcers. Lots of strong pain meds can cause nausea and stomach discomfort. So figuring out whether or not your meds or your lupus are causing your stomach problems won't be easy. The main thing I would be thinking about is getting something from your doctor to make you more comfortable. For a while, when I was having unusually bad tummy pain - burning like an ulcer - my doc prescribed a liquid for me to take an hour before or an hour after meals. I don't remember the name but it was to coat my stomach and it really did help. Good luck finding some relief.

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


aggscott
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 10/20/2007 6:31 AM (GMT -7)   
I was dealing with Fibro and Trigger Points before Lupus. A few bad disks in neck and lumbar area. Always had very tight skin in my back and neck too that would cause me such pain...you couldn't even pinch the skin, that how tight it was. I was forever having shots pushed into me like a stick pin cushion! All down my back, neck, and butt. I had to finally say ENOUGH! because they never helped me and it was a waste of money for my insurance and my time.

Aggie

smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/20/2007 6:39 AM (GMT -7)   
WOW, I am glad to know that I am not the only one suffering from these problems, not that I thought I was, but it is nice to know for sure that others go through the same things. I have been on the Methotrexate for 2 years now, the plaqunell for over a year and prednisone for 2 years now. Iwill talk to my doctor at my next appointment and see what can be done. I am sorry Marji that you are going through all that, it sounds like way to much for one person to deal with. Pat thanks so much for sharing with me. I will see what my doc has to say.

Hope everyone has a wonderful weekend, and low pain to you all.

Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 10/23/2007 1:10 PM (GMT -7)   
Hi, Connie. Sorry I'm so late getting in on this one. I had really BAD constipation problems as well as passing blood in my stool last year especially. Mine was directly related to all the meds they had me on. I don't see the main one that was causing my problem in your signature (Nabumetone, an NSAID, for me), but I am also not familiar with a few on your list so I'm not sure. Stopping that med. stopped the blood problem, but the constipation continued on into this year. An 82 year old angel that is a neighbor of mine shared the secrets that milled flax seed holds for regulating bowel movements with me. You can get this at Wal-Mart for less than $2 for a big box by Hodgson Mill. I only eat the recommended 2 tblsp a day. You can read about it, flax seed is known for having anti-inflammatory properties as well. The brand I listed is already ground up so that your body can use it (it cannot use it otherwise). You can add this to yogurt, pudding, cereal, practically anything. I even dip bananas in it to get it in. It has a nutty taste, nothing bad. That box lasts me more than a month I know. It was a very inexpensive solution for me to a very painful, aggravating problem. My rheumy at the time and my PCP were trying to send me for a colonoscopy. Now I don't have any problems in that area. You do have to keep this refridgerated once you open it. There is also a flax seed oil, but I've read so much about how quickly it is to go rancid, I haven't tried it. Also, if you take additional calcium to replace what the prednisone depletes you of, I read in my Sugar Solution book that your body can only absorb 500mg at a time. I then split up my calcium supplements. Since I drink milk with breakfast, I take one tablet at lunch with my stool softeners (I still have to use those too), and one at dinner so I get the full benefit of all I'm putting in. Just wanted to give you a few ideas you might try before having to go for something major like what was suggested for me. Hope this helps,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 9mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg, DocQLace 200mg, Flax Seed (milled) 2Tbsp


Staceymommy
Regular Member


Date Joined Oct 2007
Total Posts : 24
   Posted 10/23/2007 1:42 PM (GMT -7)   
I have other problems as well as the stomach issues but for those I take a more natural approach. When I used to get the doubling over pains the docs said it was cuz I was too backed up and put me on SennaGen it is a all natural laxative that works really well I also mix green and peppermint teas twice a day to help with any inflamation, nausea, it also has antibiotic and antiviral properties. Since drinking this tea my stomach and pooping problems have been alot better and for the first time in 5 years I have went 6 months without having any sort of infections besides one mild cold.
dx Aug 2001 SLE and Hughes, 2003 Chrondromalaysia patella, Hashimoto and IBS, 1995 Gerd and Osteo Arthritis, 2004 Migraines, Chronic Bronchitis, Sinus Tachycardia, 2006 Fibromyalgia

Married 9 1/2 years
Mom to 1 miracle boy born 11/10/02 (took 12 pregnancies)
Meds
Darvocet
Toradol
Prevacid
Toprol
Vistaril
Prednisone(during flares)
Albuterol Nebulizer

Supplements
One a day
Ho shou wu(helps with the infamation and break through pain)
peppermint and green teas
Primrose oil
chaste berry


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/23/2007 5:12 PM (GMT -7)   
Hi Connie:

Yes, I've got other conditions besides my Lupus. I also have fibro, RA, gastroparesis, and a rare blood cancer. I hate it that I've got these other diseases, cause I think they feed off of each other and it makes me even sicker than I normally would be. I hope that you are doing better. And NO you're not alone in this area. Good idea to ask if we suffer with more than one thing.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 10/23/2007 7:26 PM (GMT -7)   
You are not alone...I too, have different problems at times. I carry my meds in my backpack, because I really never know when I may need something. I believe that at this time, I am on about 10 different meds. I had to go to my PCP last week because I couldn't breath. So, now I have more meds. Along with that...Now he wants me to have more blood test do in Janury.
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES, REQUIP RESTLESS LEG SYNDROME, LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/24/2007 5:14 AM (GMT -7)   

Wow, I am overwhelmed at the responses to my question. THanks so much everyone who has taken the time to respond to me.

Sharon, My family doctor wanted me to have a colonoscopy too and I didn't want to go through that, in Canada, the prep time is 4 days, I just couldn't do that. I notice when I am the most constipated is when I feel the worst. My stomach bothers me more at that time then any other time. I will look for the Milled Flax seed and hopefully it will work. I am currently using Corn Syrup in yougurt and that helps, as long as I take the stool softeners twice a day. Not going regular but enough to help.

Barbara I am sorry that you are suffering so much. I hate being sick, but I am always thankful that I don't have cancer, that scares me the most and I am truly truly sorry that you are having to deal with that as well. How do you keep yourself from losing your mind? ((((Barbara Lee)))))

PHNDOC, I am on two different inhalers, one two puffs twice daily, the other two puffs four times daily. It helps. I hate that not being able to breathe feeling. Its scarey.

Stacey with the meds that I am on I am sure it is causing a big problem with my stomach and bowels. I know when I can go, I feel much better. A friend of mine is on a natural laxative that is available in Canada but is double the price of what she pays for it in the States. I will look for the milled flax seed and see if that works for me.

 

Thanks again everyone for your reply. It is nice to know that we are not alone.I hope you all have a great day with low pain.

Connie

 


 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 10/24/2007 5:57 AM (GMT -7)   
Connie,

I'm sorry I missed your question to me until now. Treatment of my RSD was two-fold: Get off the medications (prednisone, anti-spasmodics, etc. - they weren't helping anyway), and start doing exercises prescribed by the physical therapist who worked closely with the Rehabilitation Specialist. I was lucky in that my RSD had not progressed beyond stage 2. I am unable to take any pain medications, so I had to do all of this without any pain relief. It was terribly painful but I knew it was my only chance to get better (nerve blocks, pain meds, lidocaine patch, antispasmodics, blood pressure reducers, antidepressants, etc., had all failed to help the pain and usually caused allergic reactions or intolerable side-effects) without having to consider the spinal cord stimulator or the implated morphine pump. I don't like surgery, so that was a great motivator. And I had the wonderful support of my dear husband and my Mom to help encourage me. I also used some homeopathic remedies to help with the stress and pain but it didn't seem to do much to be honest. That pain is terrible, there is none like it. I still feel twinges of the pain in my foot if I get too lazy about keeping up with my maintenance exercises. And to this day, the muscle atrophy in my leg has not gone away. I just hope that someday, my nutritional status and physical fitness can get to the point that I can go for walks, bike rides, and hikes again like I used to enjoy pre-RSD.

Oh and the doctor wanted me to soak my foot in epsom salt water daily, and to combat the messed up circulation, I was to elevate my feet for 30 minutes two-three times/day. I also had to get used to wearing socks again (I had gotten used to going barefoot because the socks caused extra pain in my feet.

I think a few things contributed to my success. I had gone to see a well-known RSD specialist to get diagnosed and he congratulated me on the fact that I was still working and insisting on using my feet as much as I could handle the pain from doing. He said that was what kept me in stage 2, and a mild stage 2 at that. The encouragement from this doctor was very helpful. Even though I couldn't find a doctor locally to help me until a year later, even knowing that the epsom salt soaking and trying hard to keep using my feet was beneficial for preventing progression of the RSD was worth every bit of pain I had.

Feel free to ask any additional questions - I'll try hard to keep up with the thread. Take care,
-Razzle
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant & Medication Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, Very Low Lymphocyte Counts (T-Cells & B-Cells), malabsorption/malnutrition, etc.
Meds:  Pulmicort, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/24/2007 6:03 AM (GMT -7)   
Hi Connie. . . I've talked about Kefir many times here. It is full of probiotics (WAY more than yogurt). It really helps gut issues by repopulating the gut with good bacteria and a proper mucosal lining. When I stop drinking my little 4-6 oz cup daily, I get in trouble again myself. You make it at home with milk so it is really inexpensive. I won't go into details unless you think you'd like to try it.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/24/2007 7:44 AM (GMT -7)   
Razzle, thanks so much for responding. And that's ok about not getting back to me sooner, I am a couple of days before I get back here anyway. You are right about there being no pain like RSD pain. I wasn't lucky enough to have mine stay in one spot, but so far it has only spread from me knee down to my foot. I hope it stops there, it has gone far enough if you want my opinion about it,lol. I went a long time, a couple of years without meds for RSD. I fought the pain, went to therapy three times a week , two hours each time for 16 months, working closely with the physical therapists to learn to walk again, I walk with a huge limp but I walk and by myself. No more walker or cane, crutches or chair. I am proud of myself, I have come a long way from where I was 5 years ago. But the pain continues and I continue to deal with it. I will not give into it, I fight it every day and will till the day I die. I can't let it beat me, no matter how much it wants to. It's gonna lose,lol. I did the nerve blocks, didn't get much relief other then gaining about 14% range of movement in my leg, which is huge to me. I have the muscle atrophy as well and have a hard time wearing socks and shoes on my foot. But I can't handle the cold, that makes it even worse, so socks and shoes are the lessor of the two evils. I sit and soak in my hot tub, which is a Godsend. My bathtub isn't high enough to get the water over my knee, so that was out. I take Zytram for the pain and extra strength tylenol for breakthrough pain. It will never go away, I know that and have accepted it. I don't like it but this is my life and I am going to live it the best I can. No RSD is going to stop me.
I am so happy for you that you were able to beat it!!! You will have to continue to work hard to stop it from coming back, its a pesky disease,lol.Keep it up and thanks again for responding to me about your RSD.
If you ever feel like chatting about it, I would like to hear more about it.

Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 10/24/2007 3:58 PM (GMT -7)   
Connie,

Actually, my RSD was in the process of taking over my body. It started in my right foot (from a sprain of the muslces on the bottom of my foot - did it twice 1 week apart, and that's what triggered the RSD), spread to the left foot, then up my right leg to my knee, then to half-way up my thigh, and was working on getting up to my hip. It was also up to my left ankle. I also think it was affecting my lower back and starting to get to my internal organs.

The only time I had relief from the pain prior to my remission was when I had gallbladder surgery and they gave me IV demerol (plus nausea medication) for post-surgical pain in the hospital (but that was only 1 day and then they sent me home and would not give me demerol; morphine sublingual for the post-surgical pain at home after getting out of the hospital did not do much for the RSD pain).

I've heard that phototherapy can also help with RSD, but I don't know much about it.

Yes, the cold was very, very, very painful. My Mom made me a special leg wrap out of polar fleece to help with the cold. I also carried a blanket with me to put over my legs at doctor visits and when visiting family for holidays, otherwise the pain would be too much to handle. I also found airplane rides to be very aggravating to the pain once the RSD had spread above my right knee.

I'm glad you aren't giving in to the RSD. Good luck in your fight, I hope something comes along that gives you relief and healing - a miracle, a new therapy, something :)

Take care,
-Razzle
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant & Medication Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, Very Low Lymphocyte Counts (T-Cells & B-Cells), malabsorption/malnutrition, etc.
Meds:  Pulmicort, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/24/2007 8:31 PM (GMT -7)   
Connie,
Sharentrials is right on about that nambutone. I have a whole bottle I can't take due to it causing excruciating stomach pain and all the lovely accompanying problems, ike diarrhea. My rheumie recommended over the counter health food store pancreatic enzymes because he says tht in some ai disease the pancreas doesn't work well. Of course peppermint and mint are good for the stomach. If RSD is what my mom has, she feels like her feet are on fire, it is reallyhard to get relief. She has tried everything. I'm so sorry you have it and are in so much pain from it. Do you take klonopin? It works for restless leg, it might help with the RSD. I also managed to do well with tizanadine, a nerve supressor medicine. Its kind of new and I have a bad liver and if I can take it, then usually it is pretty easy o the side effects. It does make you sleepy but lasted for me all through the next day (I took it at night). I have seen news items on magnets, that magent insoles and a special magnetc pate you can put your feet on and people say it is Take care and I hope you get out of pain and get the ritht med
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/25/2007 2:15 AM (GMT -7)   
Hi Connie depending upon which of my doctors you ask one says lupus one says Primary biliary cirrosis which is also auto immune. I also have COPD which is stage 4 so that will probably get me before anything else does. I've been on oxygen since I was 47. Most people don't start showing signs of COPD until they are in ther 60's. I think mine has to do with these A/I disease attacking my lungs.

take care
carol
God Bless
Carol
Primary Biliary Cirrosis,  COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/25/2007 4:45 AM (GMT -7)   
Razzle. My family Doctor is just admitting that RSD can and does spread. When it went to my foot, the burning pain was the first indication for me. She had always told me that it didn't spread, couldn't spread. So when i asked her about the possibility of it being RSD in my foot now she finally said yes it was RSD and that it could spread. So I am really hoping that it won't go any farther then it has now. I have a small blanket that fits over my knee just perfect, not to heavy but just right to give my knee the extra warmth it needs.
I am so glad for you that you were able to beat it. I know it can be done, I hope I am one of the lucky ones like you who can shake it off.

Thanks for the encouragment.

Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

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